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Posted by Hoyt Finnamore (@hoytfinnamore) · Wed, Feb 19 at 8:07am CDT

Keeping a Positive Outlook Despite a Difficult Disease

Jayne BushmanFor her first 38 years, Jayne Bushman was a picture of health. But then one morning she woke up with an earache, something she says she'd never before experienced. Her first stop was to see her Family Medicine doctor at Mayo Clinic in Rochester who, unable to pinpoint the exact cause of her pain, sent her to Mayo's Department of Otorhinolaryngology. It was there that after a series of additional tests and examinations, Bushman learned she had much more than and ear infection. The diagnosis was Wegener's granulomatosis, a rare disorder that inflames the blood vessels and restricts blood flow to various internal organs.

The ear issues were simply one manifestation of the disease, which often affects the kidneys, lungs and upper respiratory tract. The restricted blood flow caused by the disease can damage these organs.

As Bushman listened to doctors explain her diagnosis, she says she felt "shocked." That only got worse after she went home and began using the Internet to research her disease. "The very first thing I did after my diagnosis is what a lot of people do, which is the very wrong thing," she says. "And I now tell any person I meet or talk to online who gets diagnosed with Wegener's disease to stay off the Internet. It'll do nothing but scare you. That's exactly what it did to me."

Still, Bushman says she only allowed herself to feel that way for a moment or two. "Initially, it was a huge shock," she says. "But I had three kids at home, I have a career … and I sure as heck wasn't going to let this get in the way of that. I've always tried to not live in my disease and to instead live with my disease.”

So, armed with a positive outlook and an even stronger desire to get her life back, Bushman was introduced to Ulrich Specks, M.D., chair of Mayo's Department of Pulmonary and Critical Care Medicine. After meeting with Dr. Specks, Bushman was promptly admitted to the hospital and scheduled for surgery on her left ear.

"I had a mastoidectomy," she says of her procedure, which is a surgical removal of the mastoid, part of the temporal bone located behind the ear. "I lost my high tones and my low tones in the hearing in my left ear. But I'm alive, and had I been anywhere other than Mayo Clinic that probably wouldn't be the case right now."

After her surgery, Bushman was placed on medications to help control other complications of her disease. While she was recovering, Bushman had two episodes of what her doctors refer to as "flairs" of Wegener's disease. The second flair proved to be much more severe than the first, affecting her eyes, kidneys and joints, and ultimately sending Bushman into kidney failure.

At that point, Bushman underwent aphesis treatments and was placed on dialysis while a search for a new kidney began. Fortunately, that search ended with Bushman's sister, Maureen Kelley, an employee in the Department of Human Resources at Mayo Clinic in Rochester, who Bushman says "wasn't only a match, but a perfect match."

Now, two and a half years later, as her sister's kidney continues to function properly inside her body, Bushman finds herself once again able to focus her energy on what brought her to Mayo Clinic in the first place: managing her Wegener's disease. And she says her care team at Mayo has been nothing short of "magical" in helping her to do that.

"I lost my high tones and my low tones in the hearing in my left ear. But I'm alive, and had I been anywhere other than Mayo Clinic that probably wouldn't be the case right now."
- Jayne Bushman

"My care at Mayo has been absolutely phenomenal," she says. "The collaboration of all the different departments … I've witnessed it firsthand. I could go on and on about how I could sit in Dr. Specks' office while he spoke with other specialists throughout Mayo on a conference call so that I could listen to them discuss my treatment."

And when she experienced a slight hiccup after her last exam, Bushman says members of her care team "immediately" contacted Dr. Specks. "He then contacted and collaborated with those other specialists to say, 'Okay, this is our plan and this is what we're going to do,'" Bushman says. "I don't know where else in this world you could receive that kind of care."

It's a level of care that Bushman says extended to the entire care team. "The other person who I can't give enough credit to is Dr. Specks' nurse at the time, Sue Fisher," she says. "She would absolutely make magic happen for me. I would get phone calls late in the evening or on a Saturday or Sunday either from her or Dr. Specks letting me know where my labs were, back when it was so critical. And they wanted me to be home at that time because I wanted to be home, even though they still had to keep really close tabs on me."

Bushman says that thorough, compassionate care, along with a positive frame of mind, made all the difference for her. "A lot of it, I think, is in your own hands," she says. "I know I can't control the Wegener's. I can't control if my body turns around and rejects this new kidney someday. But I can control everything else."

That's why Busman has made it a point, if not a priority, to continue living her life while doing what she can to make a difference in the lives of others like her along the way. "I've volunteered in a couple different areas of Mayo and have become an advocate for other patients with this disease, and I've also met a lot of other people through Facebook and things like that," she says. "And I always tell people to reach for the positive people in your life, because that's No. 1. The attitude that you take about the things in your life has a lot to do with how your life will go."

Dr Ulrich Specks ENT kidney transplant Maureen Kelley nephrology Patient Stories Sue Fisher Wegener's granulomatosis

 

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